Author Archives: Galina Shyndriayeva

This week we introduce Lindsay Middelton R.N., C.G.C, who is a genetic counsellor with the National Cancer Institute (NCI) of the National Institutes of Health, USA. Lindsay is part of the Urologic Oncology Branch at the NCI, which treats patients … Continue reading →

Around 30 patients and family members participated in the Fourth BHD Symposium in Cincinnati, Ohio last month. Such a record turnout had a significant effect on the flow of the Symposium – for example, by providing researchers with many opportunities … Continue reading →

Next Wednesday 29th February is a particularly important day. It not only maintains the accuracy of the calendar, but marks Rare Disease Day 2012. This year, Rare Disease Day falls on the rarest day in the calendar, like the first … Continue reading →

The RARE 2011 conference was an exceptional opportunity to focus on the development of effective policies and infrastructure for rare diseases. Speakers, including representatives from Orphanet, public bodies, funding organisations, patient associations, research centres, and industry, analysed the obstacles and … Continue reading →

There have been a few changes to BHDSyndrome.org in the past few weeks. Firstly, the Information Pamphlets are now available for download. Thank you very much to all who participated in the pamphlet survey. Many supportive responses were received from … Continue reading →

As the BHD community is spread all over the globe, strengthening connections and developing more ways of meeting others is important. At the Third BHD Symposium, people at the Patient and Families session proposed the idea of privately messaging BHDSyndrome.org … Continue reading →

Following the first post reviewing the scientific content of the Third BHD Symposium, highlights here focus on the Patient and Family sessions. Mornings were for joining the researchers and hearing the latest clinical investigations. Patients were pleased to have the chance … Continue reading →

The Third BHD Symposium concluded yesterday after two days of fascinating talks, informative posters and stimulating discussion. It was a delight to see the largest gathering yet of the BHD community in the picturesque city of Maastricht: researchers, health professionals … Continue reading →

The Third BHD Symposium is fast approaching in little over two weeks! We have already posted introductions of keynote speakers, and discussion of the sights of Maastricht. Now has come the time to present the Patients and Families Programme. BHD-focussed … Continue reading →

Thursday the 10th of March will be World Kidney Day. This celebration, taking place on the second Thursday of every March since 2006, was established by two organizations, the International Federation of Kidney Foundations and the International Society of Nephrology, … Continue reading →